Despite having set the very conservative goal of 11 pm the night prior, and having stuck to it, it was still a bit of a chore to get up the next morning, though everyone did so with grace. It was another early morning for education and, with the large conference room being occupied by a nursing meeting, we all crammed into the education room in the administration building. Having seen the growth of FAME over the last decade, where in the early days we had a mere handful of clinicians attending this meeting, there are now literally dozens who attend and space for these meetings can be at a premium. Regardless, we all packed into the room, some on chairs, some on the floor, others two to a bolster and still more standing. As each person enters the room, everyone shifts to make room, until it becomes an incredibly cozy event.
This morning, Shama was speaking about rabies, a very important discussion here especially given the events of the last several days. Having arrived only days earlier, she essentially walked into a situation that she had been training for over the last years, and, given her background in infectious disease and epidemiology, was the right person and the right time to tackle the problem at hand. Rabies in low resourced areas such as Africa remains a deadly serious problem that has yet to be fully dealt with as it is an incredibly complicated task to eradicate it in such vast areas where the vector here, dogs, mostly run free and exposure to these rabid animals is frequent, especially in places like the NCA. Couple that with poor education and resources, it is can be a recipe for disaster. And, it can be a preventable problem even after exposure as long as the victim gets the proper medical attention early enough which means receiving immunoglobulin and vaccine prior to any symptoms developing. Unfortunately, the treatments are not readily available throughout the world, patients do not always seek medical attention, and the time from exposure to developing symptoms can be many months or even years.
Yesterday, Shama and Kitashu, along with a team of researchers from Arusha, had spent the day traveling to very remote areas of the NCA, far on the other side of Olduvai Gorge, a remote area in itself, to find the families and the other victims of the rabies exposure that occurred not only from the dog that had killed the young boy here at FAME, but also from exposure to another potentially rabid dog that had bitten other children. They were able to bring vaccine with them and administer it to those who had been exposed and, after an interview, determined to be at risk to develop this condition that is 100% fatal if untreated. The difficulty, though, is that they must receive a series of four injections over a number of weeks and making sure that occurs can be very tricky itself in a population that is constantly on the move looking for new grazing areas for their livestock. The solution certainly isn’t an easy one, but at the very least, the team that went into the NCA in search of these victims made a difference for these individuals and, along the way, made important connections with those in the region who can help educate the population in this vast region. Leaving something behind can be as small as saving a single life and it is always important to remember that.
We knew in advance that our day was going to be a busy one as Frank had been contacted by a local project here, Food for His Children, an organization that assists local families in obtaining the necessary assets such as food and medicines, who was interested in bringing any of their clients with epilepsy to see us. They had gathered at least 70 patients who would be coming and it was decided that they would come over three days with today being the first. This would be in addition to the normal volume of patients we see and, having gone back to the pre-pandemic practice of announcing our clinics to the local community, we had already anticipated a greater number of patients for this visit in general. Thankfully, we had already decided to have four examination stations yesterday as having Meredith and Whitley here to help with the staffing duties made it a very reasonable proposition. Each of them would work with one team, sitting in with them while they were seeing the patient, thus shortening the amount of time needed to staff, while I would manage the other two teams who were seeing patients. In the past, I have staffed four teams by myself and it can be a very hectic process for both myself and the residents.
The cost of medications, whether it be the anti-seizure medications, psychiatric medications, or those for Parkinson’s disease, has been one of the biggest issues we have had here from the very beginning. Though we have been subsidizing the neurology clinic visits in which the patients pay a flat fee of 5000 Tanzanian shillings (TSh), which is slightly over $2, that includes the visit, any necessary lab work, and medications for a month (though in reality it can be for several months), there is always the problem of whether the patients can afford the medications when they come back for refills. Though we try to discuss whether they will have this ability or not at the time of their visit through a meeting with Kitashu or Angel, it isn’t always as simple as that and when it comes to putting food on the table or buying medicines, the former will always take precedent in any part of the world, whether it be here or at home in the US. That being said, we did an analysis of these costs in September 2019 and found that for the incredibly reasonable sum of $36,000, we could supply all the necessary medical care, including medications, for the entire cohort of 407 patients we saw that month. It’s impossible to calculate an equivalent in the US, but by using Medicare costs for a year and even dividing it for the entire population, to provide the same care at home would be in the millions of dollars.
Reducing the cost of medications would be one answer, but even then, it will very likely be more than the population here can afford. Though fully subsidizing these costs for the specific population of neurology and psychiatry patients that we see here isn’t an entirely sustainable solution, it would be one way of determining if that is the only factor impeding their health or whether there are others such as nutrition, living conditions and clean water, that are equally important. These are all questions that we are hoping to answer going forward and are working with Tanzanian researchers at Muhimbili University in Dar es Salaam as well as the caregivers here at FAME in this effort.
We saw many epilepsy patients today, many of who were on phenobarbital that they obtain for free from the government dispensaries. This is a medication that is used very little in the US due to its long term side effects and is used mostly in the pediatric population less than 2 years of age where it is better tolerated. For patients with epilepsy who we treat at FAME and keep coming back, a testament to the fact they have improved seizure control, we are using “newer” medications, though these can be very expensive and difficult to afford for when they return for refills. Phenobarbital is currently the WHO recommended anticonvulsant as it is effective and inexpensive, though comes with a cost of the long term intellectual side effects and simply something that we use rarely in the US for these reasons and the fact that we have better alternatives readily available to us. This is such a conundrum for us as we see these patients who have such poor access to medicines and are only able to afford them when they come from the government dispensary for free and that includes only phenobarbital. The patients we saw today from Food for His Children were, for the most part, already on phenobarbital that was either effective or needed minor adjustments, and it was decided that we would continue this therapy as switching them to something else was not a viable option. Had the medication been flatly ineffective or had the patient been suffering concerning side effects, the decision to switch them would have been without question, but that did not seem to occur today. Everyone was kept on phenobarb for the most part.
A gentleman was seen today who complained of carpal tunnel symptoms, which is usually a very simple issue for us to rectify, either with wrist splints or, in the event it is severe and involves motor dysfunction, a surgical release may be in order. When I went to look at the patient with the resident, though, he unfortunately had complete loss of his thenar eminence, bilaterally and absolutely no movement of his abductor pollicis brevis. The new surgeon here at FAME, Dr. Manjira, is actually able to do these procedures that are, for the most part, fairly simple, but in this case, there would have been little reason as there was so little to gain and given the risk for even the smallest of surgical complications, the benefits were clearly outweighed. We recommended wearing wrist splints to help with his pain at night, but did not suggest pursuing surgery.
Meanwhile, the really interesting case of the day was a woman that Peter was seeing and who described a long history of infrequent episodes (monthly) of motor weakness that would develop over minutes and last a short while, but were not associated with any alteration in consciousness during the episodes. She did describe a headache that would occur often following the episode of weakness, but no headache at the onset or even during the event. He was initially thinking about conditions such as cataplexy associated with narcolepsy, but there were none of the familiar triggers associated with this condition. She had been having these episodes since she was 12, and they had never changed in frequency or quality during the number of years she had been having them. It didn’t seem like migraine and certainly didn’t’ represent a seizure disorder based on the history.
The episodes were actually very similar to what is seen in a condition called periodic paralysis of which there are two main types, hypokalemic (the most common) and hyperkalemic, and are rare genetic disorders that are related to the ion channels in the muscle membrane. The disorders can be debilitating depending on the frequency of the attacks and are typically investigated by lab work and an EMG. For treatment, though, one can take preventive medications such as acetazolamide (Diamox), a medication often taken for altitude sickness, or abortive therapy that consists of taking oral potassium at the onset of an episode. We checked her labs, including a thyroid level, but there were no abnormalities there. I’m really curious how she will do with the therapy that’s been prescribed, but I’ll have to wait until the next time I’m here to see whether our treatments will help.
As we had about 40 patients today, the afternoon began to run long and it was not until after 5 pm that we finally finished up. This isn’t a problem for us, but given the fact that we cannot operate in a vacuum here, meaning there are many support staff needed for our clinical work – the doctors that we are training and who act also as our translators, others who are just translating for us, and then Kitashu and Angel, both of whom are the heart of our clinic – must stay late and help us take care of the last patients. FAME operates a small bus along with their Land Rovers to transport employees to and from town, which is about six kilometers away, but they only leave on schedule and missing them would mean having to catch a ride on one of the little boda bodas or a piki pikis (little three wheeled vehicles and motorcycle taxis, respectively) that are always parked in the lot waiting to take patients, visitors or employees down the road to town. In the end, I drove Nuru, Eliza and Anne down to the center of town to reach their final destinations for the evening.
Tomorrow, we’ll see another group of seizure patients from Food for His Children along with our normal clinic volume and try to finish at a decent time for we have reservations for dinner at Gibb’s Farm. We’ll share more that later with you 😊